Power of persistence: Navigating complex ALS treatment plans

Last updated June 17, 2024, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Navigating your treatments for amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects motor neurons, can feel overwhelming and complicated.

After receiving a diagnosis, you may find yourself dealing with multifaceted plans that include various treatments to help manage ALS symptoms and maintain your independence for as long as possible.

Understanding how your ALS treatment plan evolves over time with the progression of the disease will enable you and your caregivers to make informed decisions to optimize your care and quality of life.

Stay informed about ALS

Keeping up with reliable information about ALS can help you manage the disease proactively, rather than reacting to new changes and symptoms.

It also allows you to have more productive conversations with your healthcare providers, which makes for better decision-making when considering adjusting, adding, or changing your ALS treatment plan.

Staying informed can make it more likely that you’ll hear about new therapies, clinical trials, and advancements that may improve your quality of life or slow disease progression — or both.

Some ways to keep up to date about ALS include:

• connecting with ALS advocacy organizations such as the ALS Association, the Muscular Dystrophy Association, and the ALS Society of Canada
• learning about the disease from reliable medical websites, including ALS News Today
• asking the healthcare staff at your ALS clinic and your doctors to keep you informed
• participating in ALS conferences, webinars, and workshops
• following social media accounts of ALS researchers, advocacy groups, and medical professionals.

Talk to your doctor

Discussing your ALS treatment plan with your ALS healthcare providers can be intimidating at first. But by learning to advocate for yourself, you can help make sure you have a care plan based on your needs and preferences. And that decisions about your care, including how to best manage your symptoms, such as muscle spasms, breathing issues, difficulty swallowing, and excessive saliva, are collaborative.

You might also want to talk to your doctor about supportive forms of therapy, including physical therapy, occupational therapy, speech therapy, respiratory therapy, psychotherapy, and mental health counseling.

While keeping track of all the information can be overwhelming at times, there are ways to help you feel more in control of your conversations with your doctor, including:

• being honest with your doctor about your symptoms and emotions
• asking for clarification if you don’t understand an explanation or instruction
• bringing a support person to appointments to remind you about specific questions and as a backup for remembering, or writing down, information
• requesting additional appointments when you still have questions or are uncertain about the direction of your treatment.

Develop a care roadmap

The goal of ALS treatments is to address symptoms such as muscle weakness and twitching in your legs or arms, slurred speech, trouble swallowing, and other conditions such as pseudobulbar affect.

Typically, you will work with a multidisciplinary care team that may include neurologists, physical therapists, occupational therapists, speech therapists, respiratory therapists, and nutritionists.

Together, you and your ALS healthcare team can identify and address your needs by discussing how to:

• make choices about ALS medication options
• report side effects
• manage muscle cramps, stiffness, and spasticity
• manage excess saliva and difficulty swallowing
• handle respiratory issues, such as trying noninvasive or invasive breathing techniques
• make modifications to diet, such as whether to take nutritional supplements.

ALS News Today columnist Kristin Neva is a caregiver to her husband Todd. She wrote about how Todd’s treatment pathway was relatively smooth when they lived near an ALS clinic.

Every month, they met with numerous specialists who guided them by offering strategies and other helpful advice to deal with the progression of the disease. But after they moved to another state to be closer to family, they no longer had an ALS clinic nearby.

“For the last several years, we’ve had to manage Todd’s healthcare with primary care doctors who are kind and eager to help, but unfortunately aren’t all that familiar with the disease,” she writes. She says they’ve managed by reaching out to others who are also dealing with difficult circumstances.

At some point, you may find yourself having discussions about the options for further improving your quality of life, including:

• using mobility aids such as a rollator, braces, or a wheelchair
• using communication aids and devices for speech difficulties
• making home adaptations for safety and accessibility.

ALS News Today columnist Dagmar Munn writes about how the modifications she made to her bathroom, including adding grab bars and a shower chair, when she was first diagnosed more than a decade ago are still of value.

“Ask a real estate professional what the most important room in a house is and they’ll probably say the kitchen or the living room,” she writes. “But ask someone like me who lives with ALS and we’ll likely tell you it’s the bathroom.”

Take care of yourself

Living with ALS can be exhausting, whether you’re managing your own symptoms or are a caregiver.

Juggling healthcare appointments, overseeing medications, including remembering to take them on schedule, and following multiple treatment plans can mean that sometimes other important things fall through the cracks.

Do not be hard on yourself. Instead, accept that managing ALS is demanding, complicated, and often overwhelming. Taking breaks, seeking help when needed, and engaging in activities that bring you joy are not just luxuries; they are necessities for your well-being.

Neva writes about how life with ALS is a sprint for some and a long-distance race for others.

“After five years with the disease, we realized we were in a long-distance race, and I would need to pace myself with caregiving, particularly at night,” she writes. They now have health aides to help with Todd during the nights.

To avoid burnout, set up a daily routine that includes physical exercise, rest, and fun activities.

Eating nutritious meals and conserving your energy can help with managing ALS-related fatigue. Maintaining your physical strength and mental health can give you the strength and resilience to keep up with your ALS treatments.

Some other ways to take care of yourself include:

• seeking counseling for mental health and emotional support
• practicing stress reduction techniques such as mindfulness, meditation, or yoga
• staying in touch with family and friends for emotional support
• asking for help when you need it
• joining ALS support groups, in person or online, for guidance and empathy.

Self-care is a key part of effective caregiving and treatment management. Nurturing your physical and emotional health can mean you’re better equipped to handle the demands of living with ALS.

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.